Louise O'Reilly (Dublin Fingal, Sinn Fein) | Oireachtas source

I agree with the sentiments expressed. People have made huge amounts of money from this situation. I fully respect the role that the HSE plays in trying to get the best value for money. We have witnessed scenes where people protested at the gates of Leinster House. People have put pressure on us to put pressure on the HSE. The issue is cyclical, which is really unhelpful. I echo what was said earlier. If there is anything that we can do, from a legislative perspective, to make the process easier and eliminate problems then we should consider doing so.

In terms of the drug Kuvan, Mr. Hennessy talked about stakeholder involvement earlier. I understand that the HSE is not hostile to the initiative but there does not seem to be a structured mechanism to allow stakeholder involvement. Is there? I ask because people have contacted us to tell us that they await news. Unfortunately, they do not know whether to check the Internet or await a telephone call. It seems that the families and patients, who are central to a lot of what we have discussed here this morning, often feel that they have been left out of the process. I appreciate that Professor Barry and Mr. Hennessy have held a meeting and there might be another meeting. Has a set of rules and protocols been written down that governs stakeholder and family involvement? They do not feel like they have been involved. They do not want to contact their local Deputy about this matter because they have better things to do. They make telephone calls to our offices and drop in because they do not feel that they have been involved in the process. Please outline how their involvement is catered for.